Here’s what it looks like from a parent’s perspective. One day, the child you know is just gone, and in his or her place is a child with crippling anxiety, rage, or depression, or a mix of all three. Sometimes, this change happens overnight, as is the case with classic PANDAS or acute-onset PANS. Sometimes, it’s more of a boiling frog situation. Day by day things are getting worse, but you just take them in stride and deal with them as we parents are wont to do, until one day, you just can’t. And when you think about it, you realize that this isn’t your kid. From time to time you catch a glimpse of the child you once knew, but little by little, that child gets further and further away from you.
PANDAS/PANS is an auto-immune disease that causes brain inflammation. Specifically, it causes inflammation of the Basal Ganglia. This is the part of the brain that governs executive thinking, emotions, movement, and more.
PANS can look like Aspergers/Autism, OCD, tics, anxiety, depression, oppositional defiant disorder, ADHD, and sleep problems. If your child has more than one of these diagnoses, you should probably be thinking about PANS.
PANS is essentially caused by an overwhelmed immune system. For my family, the root causes included congenital Lyme and coinfections, exposure to mold in our home and at school, a high load of heavy metals, including high copper levels, high levels of glyphosate (Round-Up, which is sprayed at harvest time on conventional wheat and oat products including most pasta, Cheerios and Quaker Oats), a high level of toxins created by automobile exhaust, too many vaccines too quickly, various viruses and retroviruses, and high levels of EMR (Electro Magnetic Radiation) which blocks the body’s ability to remove the above toxins. We have test results that show all of this. Certainly there must be other underlying causes that we don’t yet know how to test for.
Usually, when a kid gets sick, we take them to the pediatrician, get a prescription for what ails them, and go about our merry way. But that doesn’t work with PANS kids. The answer to getting better, for my kids, and probably for many kids with PANS, lies in removing enough toxins from their bodies so their immune system is no longer overwhelmed and can do its job. Often, long-term antibiotics are used to help the body fight infections while it heals.
Conventional medicine does not recognize the role of toxins in immune disfunction. As a result, many PANS families have to forge our own way forward with the few doctors who know how to navigate complex auto-immune conditions.
The PANDAS Network estimates that PANS affects 1 in every 200 kids. Despite the misleading name, PANS also affects adults. PANS is also known as autoimmune encephalitis; a slightly more inclusive name. Only a small minority of people affected by PANS actually get diagnosed and helped. The vast majority of people with PANS currently go undiagnosed. The world is becoming more toxic every day, so it wouldn’t surprise me to see the number of people who have PANS skyrocket in the future.
Want to learn more? See Resources for Learning More About PANS.
